Originally created to share news around our craniotomy adventure, the focus of this blog has now shifted to the continuing progress of recovery, general thoughts on life and staying in touch with our great community of friends.

Sunday, November 30, 2008

We have a beautiful, wet snowfall decorating the outdoors. It’s our first real snow of the season and it’s perfect, story-book snow. There’s no wind so every tree limb is outlined, and the streets cleared themselves almost instantly because it’s above freezing. It’s a perfect Sunday at home.

Michael and Shea both came down with something that, in due course, got passed along to me. Except while it was mild for both of them, I seem to have a stronger, more lingering version. Or at least to be reacting to it more strongly. This is the perfect opportunity to put into practice all those lessons I claim to be learning/have learned about trusting myself, taking it slowly when the energy isn’t there, etc. The theory is easier to grasp than the practice, as my first instinct was to plow on through it and only belatedly to realize that rest is indicated. More slowly than I like to admit, I did grasp the lesson eventually and have consequently been sleeping more of the time than warrants tallying up. Something about this bug has brought back headaches, which is vexing, but my balance continues to improve, as does my shoulder, so there is much more forward progress than anything else. However, since I’ve been working on two or three writing projects, checking in here wasn’t in the cards with reduced energy available. I miss the contact!

Michael and Shea are working on finishing the drawers for the linen cupboard that we moved when we re-routed the upstairs hallway when we did all our remodeling some years ago. Hooray! I'm being quietly supportive as I'm totally thrilled to have this project well underway. It will be great to have the drawers back in use and also to have the linen cupboard, one of the pieces of original, beautiful woodwork in the house, complete again. Plus, it is always fun to watch and listen to the two of them working together.

Thursday, November 27, 2008

We have much to be thankful for today. The support and caring that have come from all of you is right at the top of our list. Thank you for your friendship, comments, help in oh-so-many forms, suggestions, advice and, most of all, being out there caring. Have a great Thanksgiving.

Wednesday, November 26, 2008

We had a robust family discussion one night on a walk about the correct definitions of twilight, dusk and sundown. There might have been a few other terms in there, I forget. (I’m adapting to the forgetting more gracefully and can even make jokes about it—most of the time.) In any event, we tried to differentiate each term, not very successfully, as we were watching a gorgeous sunset and trying to find the right term for each chunk where we could detect changes in the light. My favorite part was what I believed to be twilight, though Shea in her true-to-form self vociferously contested my application of that term. I like what I think of as twilight, with its mix of light and dusk and pretty colors. At least that’s my definition and why I chose that name for where things stand, though as Michael points out, my twilight is probably the one before dawn, not going into nightfall. I would have posted this sooner except I wrote this on my way out the door this morning and he was concerned that I was sending a gloomier message than intended by using “twilight” without explaining….

The cumulative effects of tortoise-dom, or slow hare-dom, whichever, are in full swing in this stage of my adventure. I am fully myself, just less often. While the summer was a twilight of its own, where nothing ever felt quite right and nothing got done (for which I beat myself up mercilessly), now I feel like my old self, just in short spurts and not as consistently as my old life. The epiphany of coming out of anesthesia and really feeling like “me” contrasted with the summer and early fall is not something I’ll ever forget. However, that I’m not my old self reliably or as often requires an adaptation that I’m still striving to master.

In some respects, it is freeing to say “no” more often. That’s something I’ve never really given myself permission to do, so exploring that realm has almost as many positives as negatives. The process of assessing my priorities to assign available energy is a good one I only wish I’d done while I was at full strength. It is dumb that it takes a full-scale intervention and “stop action” event to make that happen. We’re all usually so busy that we hear all the advice about prioritizing, and we nod our heads and say “Oh, yes, and I’ll do that another later.” I don’t have any real words of wisdom here, other than to pass along that I wish I had done it sooner.

On the other hand, it can be frustrating that being out in the world costs energy in ways that are hard to measure. It’s not possible to schedule a whole slew of back-to-back meetings, for example, which was a staple of my life for decades. That’s hard to get used to, the more so because of how unpredictable the energy levels can be. While it’s no longer mandatory to block regular times for full-scale naps because on many days quiet periods of rest at home can work to recharge, I just don’t know what to expect on any given day.

“Everybody” says that it can take one to two years to be fully back to normal and I’m prepared to take this at face value. My progress from even a few weeks ago is tangible, so I’m not discouraged, just trying to figure it out and get the balance right more often than not. Living through it, though, has its grey moments, even as it has so many moments to savor, celebrate and for which to give thanks. I’m calling Part Five the Twilight Stage.

Tuesday, November 25, 2008

After my recent post about time spent at home for this medical adventure compared to the longest periods I’d ever spent off work before—having babies—Kearney pointed out that this time, I’m more like the baby than the mother. In a lot of ways, this is true, as it’s my brain this time that is adapting to new circumstances. Kearney pointed out: “You underwent some pretty shocking physical trauma, during which your brain got all mushed about, and then in some respects it had to re-learn how to control your body (especially the right arm/shoulder, balance), process language, etc. Think about how much time new babies spend sleeping while their brains do all that new stuff, especially given that new brains are designed to be extremely plastic. Yours isn't really designed for that per se, but it's doing a darn good job anyway.” This perspective, which makes a lot of sense, would then make the “new me” the product of this adventure, as well as still a person who liked to be greeted, acknowledged, respected, etc.

Meanwhile, a physician of our acquaintance told us, in the nicest possible terms, that it is “ignorant and unfair” to suggest that physicians pursuing evidence-based medicine (EBM) aren’t caring. That seems right: the more I’ve thought about this, the more it seems that many of the unintended consequences we’ve experienced from, say the quest for identity above all else in medical interactions, stem from the systemic implementation of the EBM findings, not necessarily the caring (or not) of individual participants in the system. So maybe the evidence-based management findings are even more relevant than on first thought. That’s because the implementations of EB medicine that reduce humanity and strive for consistency would then be the artifact of management decisions, not necessarily individual care providers. There’s some evidence to support the view, then, that the evidence-based management literature might be recommended to the health-care leaders implementing findings from evidence-based medicine. I talked yesterday with some folks in a large medical system and one of the topics we visited were the problems that have resulted from the system’s implementation of pay-for-performance incentives in a number of layers. The evidence-based management literature is very clear that individual financial incentives are not a great way to get better performance—they’re just easier to implement than coherent, meaningful systemic change.

This week has brought more advances in the healing of the incision, such that there’s now really only one remaining small (1-2 inches) sore section; some of this improvement was brought by Michael pulling what seemed to be some ingrown hairs elsewhere. Within hours after his work, the swelling subsided, and that section is hard to find any more after it had been troublesome since the beginning. The scalp is still sensitive/numb, but the progress is so great on the incision that we’re feeling optimistic indeed about the prognosis for the rest of it.

I’m still learning to balance my energy with tasks to be accomplished, so that’s it for today. More soon.

Sunday, November 23, 2008

People who haven’t seen me since surgery usually comment on how great I’m looking. The usually unspoken subtext here seems to be “compared to what I expected (or feared).” Sometimes, if spoken, the next remark is “you still have hair!” Those comments especially come from those familiar with brain surgery, who have had some form themselves, usually, or know someone who has. The fact that the neurosurgeon only shaved the incision and not my whole head has been an enormous positive throughout this experience, though it may be that I’m only just now truly appreciating the full extent of his gift.

Among other things, it lets me go out in the world without having to be a “brain surgery survivor” at every turn with a headful of stubble or very short hair. Pretty much, I look like I have always looked. Although there are still frustrations with not being able to do as much as I’d like, or as fast, the tumor and surgery are not central facts of my existence or identity. It’s great to be able to talk about this experience when it’s appropriate and otherwise just let it be. A local brain tumor survivor organization has generously reached out to me, with resources and offers of support. As I thought about it, I realized that having had a brain tumor removed is for me simply a medical adventure I had—and am still having—but, for now at least, that’s it.

Counting my many blessings is important to me, and today, I’m thinking anew about giving thanks for having hair. The glorious feeling when I was first able to wash my hair again myself is still real to me, and I hope not to forget it anytime soon. Having a full head of hair, ditto.

Saturday, November 22, 2008

Our day-to-day lives are very little different before and after my father’s death. Because his hearing was poor enough that it wasn’t any longer possible to talk on the telephone, we never talked. He had stopped sending even his intermittent email communications a while back, so most of our communication was one-way: we sent him books or notes or email now and then. Looking back, we see that we’d tapered down in that area, too, probably because it yielded little response over so much time. We even had the feeling, leaving the last time that we visited him in early summer, that we might not ever see him again. All the same, the world feels different now than it did before we learned of his death.

Shea and I are watching all the seasons of House on DVDs. (My policy is that pretty much anything your 17-year old daughter will do with you, you should do.) Last night, one of the episodes showed House doing the childhood game of “I’ve got your nose” on a patient. My immediate reaction was “my father used to do that with me!” I hadn’t thought about that in years. Even a memory of that sort has a different texture after his death. I’m still trying to sort out the power of the idea that he was alive, just not in contact, compared to the reality of his death. They feel quite different, though I don't really have a handle on how or why.

Recent discussions about evidence-based medicine and error-reduction in health care have me thinking about the other error-reduction and evidence-based literatures. David and I had an interesting discussion about error reduction in aviation (hugely successful, with some elements, like checklists, slowly being adopted in healthcare) stemming from an idle musing on my part about why airlines don’t seem to value teams of people experienced with working together. All airline employees bid individually on schedules and routes, so most (I think) rarely work with the same people. David pointed out that the premise behind airline training, at least for pilots, is that it has to be error-free, no matter who is in the cockpit. That makes sense, I guess. On the other hand, there is still something about working with people you know and trust and have gone through experiences together that seems valuable to me.

The evidence-based management literature focuses on the critical need to get and base decisions on real facts, not beliefs or what-we’ve-always-done practices. Reading that literature, one of the main lessons I draw from it is the importance of people to organizations. Here’s a quote from Jeffrey Pfeffer’s congressional testimony on this topic—an easy read and worth the time:

Although the list of high commitment or high performance work practices differs slightly among authors and studies, most such lists include: a) sustained investment in training and development, including job rotation, both formal and on-the-job training, and a tendency to promote from within as a consequence of the successful internal development of skill and people; b) an egalitarian culture in which formal status distinctions are downplayed, salary differences across levels are less than in the general economy, and in which people feel as if their contributions are important and valued; c) delegation of decision making responsibility so that skilled and developed people can actually use their gifts and skills to make real decisions; d) high pay to reduce turnover and attract the best people, coupled with rewards that share organizational success with its members; and e) employment security and a policy of mutual commitment, so that the workforce does not fear for the outcomes of events over which it has no control and instead, feels reciprocally committed to the employer.

It is important to note, however, that these management practices are not "techniques" to be imported. As David Russo, the former head of human resources at SAS Institute once commented, what matters is not what the company does -- its various programs and policies -- but the philosophy that provides foundation for all of its choices. That philosophy is one of valuing the workforce, treating it with respect and dignity, and making people as if their jobs are meaningful and their contributions important. [emphasis added]http://www.evidence-basedmanagement.com/research_practice/commentary/pfeffer_congressional_testimony_08mar2007.html

As Kearney commented about the emphasis on training all health care staff always to deal with identity first, how sad that current concepts of quality health care seem mutually exclusive with common courtesy and humanity. Why is it so hard to find a sensible middle ground?

Bob Sutton has some fascinating comments today on a bailout for the automakers, including his experiences with the management culture at GM: http://bobsutton.typepad.com/my_weblog/2008/11/the-auto-industry-bailout-thoughts-about-why-gm-executives-are-clueless-and-their-no-we-cant-mindset.html

Friday, November 21, 2008

This week marks nine weeks since surgery, ten weeks since diagnosis. Over that span, I’ve spent more time at home than ever since I started living independently at 17. I’m still processing what that means and how I feel about it. Even maternity leave with new babies was “only” six weeks each time, so this has been a novel experience. Of course, it’s hard to say what being at home for nine weeks would be like when I could actually experience the whole house, with a real life—much of the time, especially early, I was in bed. Since I’ve been emerging from the sickness cocoon, one side-effect of the surgery and its accompanying fatigue has meant that I get more done if I stay home. I think that must be related to the cost in energy from the stimulation of being out and about among people and in different places, versus the lower levels at home.

Looking back, this is the culmination of a trend that started some years ago. Before then, regardless of the efficiencies of at-home versus in-office, I would have tackled most tasks at my office. Over time, though, I’ve moved to doing more and more work at home. Grading, for example, goes much faster without the draw of other options and people to interact with, so I have been doing that almost exclusively at home for some time. Now, the thought presents itself that perhaps moving to doing that work at home was another, unnoticed, coping strategy as the tumor grew?

We are still visited every now and then with moments of insight about certain events or changes in recent years that were likely related to the tumor. Working more at home is one; another is that I stopped being able to sleep on my right side some years ago because it hurt my shoulder. The exercises to strengthen my shoulder never helped much at all. When the right arm problems started after surgery, the surgeon showed us a scan of the tumor and pointed at a spot directly above it, noting that portion of the brain controls the right arm and shoulder. He speculated that the problems were from the pressure that part of my brain had been under and the movement of my brain back into that space. It’s plausible that the shoulder sleeping challenge was an early side-effect of the tumor, as well. That’s along with the balance problems that led us to begin strength training two years ago, the ever-more extensive notes I made for my classes and presentations, and all the other things I've written about.

My email has been full of comments about the effects of evidence-based medicine on empathetic care stemming from Kearney’s post. Another aspect of the changing medical culture that has been pointed out is how shift time-limits (especially for junior doctors) affects the continuity of care and thus personal relationships in health care. We were lucky in this medical adventure that we had a very consistent physician team: the surgeon. In a more “normal” hospitalization, there’d be residents, interns, and platoons of specialists. In Michael’s dad’s hospital stay, there were intensivists and hospitalists as well as your more garden-variety nephrologists, oncologists, etc. In my case, there simply weren’t other physicians or hospitalists involved in my care, at least that we personally interacted with after the surgery. We saw a slew (24, by our count) of nurses from Wednesday to Saturday, but only one doctor. We never did see my primary care physician, who in past experiences always stopped by when he was doing rounds of his patients. He was around both times babies were born, and involved in their assessments and early care, for example. (Then, his office was in the clinic connected to the hospital and now he’s on the other side of town, but we’ve not had any contact at all from him, which strikes us as unusual, given our decades-long experience with him: the changes in medical systems are even affecting people’s personalities, is our conclusion.)

Finally, C pointed out that the anti-seizure meds could well be a factor in my short-term memory losses, as it’s one of the standard side effects of them. I’m feeling a little foolish that I never even thought to look up their side-effects, particularly since I’ve had unusual reactions to so many of the meds throughout this experience. Duh.

Now that my energy is returning, I’ve excavated my desk and scanned the horizon for work, trying to plot a sensible course that fits available energies and priorities. Wish me luck. Happy Friday to all.

Thursday, November 20, 2008

With 48 hours of no drugs and a renewed interest in getting back to my to-do lists (not to mention my ramping-up de-cluttering drive), we have declared Part Five officially under way. To be pain-free, or nearly pain free—certainly nothing requiring constant analgesics or narcotics—and having completed the seizure-preventing course of meds, this feels like a big step. Slow Hare speed monitoring is on high alert.

Recent mention of customer service experiences pushed a lot of buttons. In addition to David’s story about his service ticket being closed because he wasn’t home when the appropriate technician called two days after his extensive span on the phone with the first-level call center, other stories poured in. The technique of “closing your ticket because you weren’t there,” not because the problem was solved, seems be a particular company favorite. The most frequently mentioned variation was “you didn’t respond” within an arbitrary (and undisclosed) time window. What on earth gives these folks the idea that this is a sensible way to conduct a business? Do parents not teach about penny-wise and pound-foolish any more? Or have we jettisoned that bit of wisdom along the way in our drive to be modern and trendy?

Kearney’s post about “person or product?” also stimulated a lot of comment. In a conversation with a physician, the take was very different: it’s critical, in that view, for verification of identity to occur before even a greeting, so it is never, never overlooked. On the other hand, J, a social worker, made observations about the (unintended) effects of evidence-based medicine over time in recruiting social workers and nurses. I might not be summarizing well, but the gist is how, at the beginning of her career, the ability to connect was paramount in assessing applicants, as opposed to now when those attributes are disregarded, or at least dramatically reduced in importance, in favor of the ability to implement assessment procedures, etc. As is so often the case, it seems to me that a sensible balance is required. It’s hard to achieve the balance with human beings infesting our system, and nonetheless should always be our goal.

My view is heavily influenced by my work teaching “soft” skills, like communication, professionalism, conflict resolution, management/leadership, ethics, etc. There’s nothing that gets attention when addressing a medical audience like empirical evidence revealing that the physicians who get sued for malpractice are not those with poor technical skills, but those with poor communication and connection skills. That stimulates unbelievable, immediate changes in body language, focus and respect. Anecdotally, med mal lawyers I know talk about the people in their offices saying “I know it was Dr. Smith who cut off the wrong leg, but don’t sue him because he was so nice to my mother and wife. Sue all those other jerks who were involved, but don’t include him.” While we can be pushed by events into suing people we like, the threshold for what it takes is very high. One interesting study in the medical field shows that many families never even considered suing until sky-high bills they couldn’t pay started arriving for their dead or birth-damaged babies. Some medical centers have modified their procedures in cases with “adverse outcomes” (the label of choice) to stop all billing procedures until the facts and responsibility have been sorted out.

At the other extreme, Bob Sutton has introduced a lovely concept called TCA (“total cost of assholes”) in the workplace, and generated an incomplete list of costs that can arise from tolerating truly disruptive personalities in the workplace: distraction from tasks; climate costs (fear of making suggestions, reluctance to take risks, inability to learn from failures, damage to forthright discussion), loss of motivation and energy; stress-induced effects and costs (absences illness, etc); turnover, lost clients, etc.

We’re not suggesting that not greeting patients moves medical staff into the "costly" category, though we are asking whether the cumulative toll on relationships has been considered. Surely there must be another way to maintain rigor in patient identification without sacrificing common courtesies in greeting and relationships?

The to-do list beckons, including occupational therapy and my new mentee at the middle school. Not to mention the piles of grading and other work—and the speed traps of my own devising and those in my environment that are monitoring the pace. See? Back to the need for a healthy balance in all things. Happy Thursday to all. Keep those notes coming. Your ideas and questions are a wonderful tonic in this medical adventure of ours.

Wednesday, November 19, 2008

Old dogs can learn new tricks. My new resting habits are Exhibit A, and there are others as well. Thankfully, they’re not all tumor-related, and thinking about my new ways for maintaining energy levels has increased my awareness of other positive changes in daily habits. Please note that we’re conspicuously not thinking about how life will change next year when Shea starts college, though we’ve been laying foundations for an empty nest quite consciously for a few years. We’re enjoying life too much as it is to contemplate that upheaval just yet.

Here’s an example of the kind of change I am willing to think about now: for many years, I’ve read three newspapers every day. Like so many pieces of my life, it had a routine to it: headlines on all papers first, then a front-to-back reading. In the summer, when US papers aren’t available, we tried the International Herald Tribune and buying (once it started and was widely enough distributed that we found it around us) the European Wall Street Journal. Neither was very satisfactory, compared to the domestic editions. As on-line versions came into being, I switched some years ago to reading the New York Times exclusively on-line while we were away.

While there were oddities, it’s still possible to read the entire NYT, with some limitations imposed by their implementation. I submitted a range of suggestions to their customer service site, summer after summer, to a selection of which responses came back saying that my experiences were wrong and their way was right. This was emblematic of the lousy customer service attitude of so many large organizations that David and I were talking about the other day. While my suggestions might not be worth implementing, it’s brainless to write back and tell me my experience is “wrong.” It might not be useful to them, or worth a change, but that kind of response is beyond tone-deaf, especially when writing to a loyal, decades-long customer. That’s my assessment from my new mellow perspective. (It boggles the mind to think about likely reactions to such notes by New York City customers who are live with big-city stimuli and pacing and general Type A-ness.)

Anyway, leaving that rant alone, I still read the paper version at home—and sometimes the on-line edition, too. I frequently read the on-line version exclusively while traveling. (If you open and download all the stories you’re interested in while you have a connection, you can then read each story in succession on an airplane or in another location with no network access. The trick is to notice whether the story has a second page, and make sure you get the “single page” option selected so you have the whole story when you want it, not just the first chunk. It would be great to have the option to open stories only in the single page format so this last step wouldn’t be necessary. After my other experiences making suggestions to the on-line NYT, it seems impossible to imagine that anyone at the paper will listen, so I haven’t even tried to suggest it.)

What’s interesting to me, and what catalyzed this whole essay here, is that the unwritten “rules” in my head seem to be completely different for the paper version and the on-line version. In turn, over time, this has changed for the better the way I approach the paper version.

On-line, I usually read the NYT’s commentaries first; on paper, their placement on the op-ed page means they come after all they international and national news. Somehow, having read the on-line version in the way it arrives has given me permission now to read the physical paper out of order. Of course, Michael always reads the paper out of order according to my set of rules. Under his less rigid life view, which leaves him generally more relaxed, just about any approach works. (He also doesn’t have any rules about folding the sections back to what he’s reading and leaving them lying around that way, but the less said about that, the better.)

Another digression: the paper price of the WSJ in Europe is too high (2 euro a day) for regular consumption, especially when the dollar is in the toilet as it was last summer. The regular on-line subscription price is ridiculous, so we tried it on the Kindle this summer under a free offer choice. Take my word for it that it is completely maddening to read the Wall Street Journal on a Kindle. Together, these two organizations have made a combination of dumb-headed choices that leave even reasonable users (Michael is the metric for this) dumbfounded. “They did this on purpose?” is a common refrain. And the price after the free offers expire is disproportionate to the value. The upshot is that we’d rather go without the WSJ than read it electronically. This cannot augur well for the business model news organizations are going to have to find to survive in our changing world. (Unless, of course, we are so far out of the mainstream that their approach not working for us practically guarantees them success with the rest of the populace.)

Trying to come back to the topic, the short version of all of this is that a changed medium has changed my rules and habits. I still find the paper and electronic versions to be different experiences, differently satisfying. When home, I still read the paper version, though it’s much more frequently in what would have previously been a non-compliant, out-of-order, fashion. My inner rules czar has come to accept this gracefully. That seems like a harbinger of generally relaxed rules, especially the arbitrary ones, thoughtlessly adhered to at some cost even when not useful and constraining. That’s a positive change.

I've come to see the difference between a routine that simplifies life, reducing the need to expend thought on repetitive tasks (how to load and unload the dishwasher, for example) and one that is constraining. My new-found habits catalyzed by the change in the newspaper-content delivery mechanism have been freeing, and are leading to a re-examination of other routines. Some survive the examination, like having a set path to frequent destinations. I hate to have to think about navigation, and knowing in advance a way that works is, for me, value-added. Michael, on the other hand, loves variety and drives a different way as often as possible, even to places he goes all the time. When riding with him to a place for which I have a set route, it takes a real act of will not to tell him that his way is “wrong.” (Sadly, this effort is not always successful, as even riding, it’s less wearing for me if the familiar route is followed. I’m working on this.) Differences are illuminating and world-expanding.

So is letting loose of rules and routines that do not make life better.

That’s a lot of writing on a little topic. Or, maybe a big one, if all the implications are examined. Whatever. I hope the sun is shining wherever you are, at least inside, if the outdoor sun isn’t cooperating or didn't get the memo today.

Tuesday, November 18, 2008

Doug got to wondering about what the mechanism is that causes my shoulder/arm to work less well when I’m tired than the rest of the time. That got us to wondering about it and we don’t have any good answers. I do know that, during my occupational therapy yesterday, Sheila (OT) was working the shoulder blade and associated muscles, which at various times caused the tingle in my fingers, especially my little finger, to reappear. Other manipulations brought sharp head pain. And, the portion of my upper arm that aches when my arm is tired is connected somehow directly to the muscles around the shoulder blade on my back. Those seem to be the main culprits in not doing their job, and somehow everything else radiates from that. My shoulder is now taped again, by the way. Kearney consulted Dr. Google to learn that fatigue is a major symptom after just about any kind of brain trauma (this category includes brain surgery), which means that the brain has to work harder to process life going by as well as to heal itself. She points out how long it can take for even a badly scraped knee to heal—and that’s only skin.

Doug’s original question was why fatigue in the CPU--he’s a computer guy--would lead to soreness in muscles/limbs, and wondered if maybe there’s a connection to nerve signals in both directions between the CPU and the limbs being affected by hormones and if exhaustion affects hormones. (He was concerned about turning me into a computer after Kearney had just objected to me being turned into an object, but she didn’t object, so I’ve stayed with his metaphor.) Doug’s question was about the difference between the limb getting tired after doing a lot and it getting tired just because the brain gets tired. All good questions. Does anyone know the actual mechanisms?

On a related point, David visited this weekend on his way to taking his mother on an 80th birthday journey to her land of origin, and we got to talking about customer service. That reminded me to write a follow-up on the response (sort of) we got to our report about our medical adventure, including our counting exercise. We got a two-sentence letter thanking us and saying it had been passed along to relevant others in the organization. As David pointed out, it would have been nice for such a letter to include even the most passing reference suggesting that its content had been read and considered. This applies especially to the simplest suggestions, like double-sided name tags. Why is stuff like this so hard to perceive from the inside and so clear from the outside?

Today brings PT and strength training. Then, rest, as today is another teaching day (3-hour class, prep and aftermath) and that’s about all the energy there is for exertion these days. More later.

Monday, November 17, 2008

Yesterday, we summarized some of the lessons we have extracted from our family’s medical adventure. It’s important to see this as a group experience, because while there was only one surgery, its effects on the rest of the family were significant in worry, time, exertion and in how it completely superseded other important matters in everyone’s lives. One of the blessings I count every day is how well we got through it together.

For me, I woke up this morning feeling unambitious. That’s an effect of my physical state, I’ve (very, very slowly) learned. For most of my life, waking up has meant reviewing my to-do list and getting to work. On good days, now, the same thing happens. If it doesn’t, one of the attributes of a tortoise or slow hare is to heed the signal and take things slowly. Originally, my first approach when that happened was to ignore it and push on, figuring it was an effect of shirking, or maybe depression. Since observation has shown that neither of those is really a reasonable assessment, and experimentation has shown that resting on those days actually leads to better results, that’s what I’m now (belatedly) learning to do. The good news, for me at least, is that yesterday, I woke up thinking about the book I have under contract and actually wrote a few pages. Teaching today and tomorrow will be my priority and take all available energy, and I’m hoping that the back of the week might be devoted to reviving the book project, getting reoriented with that and getting back to work on it. That prospect is a happy one to contemplate.

Kearney’s most recent post stimulated fascinating conversations about some of the perhaps unintended and unconsidered consequences of the evidence-based movement upon healing professions. That conversation needs to be continued, as I think it has implications worth examining. More on that later, I hope.

On the symptoms/after-effects front, here’s a top down assessment of where things stand two months after surgery (plus an extra week for being at capacity on the exact two-month anniversary).

Scalp/IncisionTwo months after surgery, my scalp still has an area the size of my hand that is numb and hyper-sensitive (yes, at the same time, and yes, I know that sounds contradictory). The incision is nearly impossible to find in some places (the majority of its length) and still pink and raised in four or five short segments of about an inch each. The major ridge by the original drill hole has vanished. I have two small, dime-to-nickel-sized bald spots that look to be permanent.

HeadachesFewer and farther between than even two weeks ago. Headaches are still always a sign of over-exertion, and one reason they are lessening is because, finally, I’m getting better at reading the signals and slowing down when fatigue is rising. See? Even old dogs can learn new tricks.

Shoulder/neck/armAnother month of twice-a-week occupational therapy is coming up. While, generally, I’m rebuilding strength and the range of motion is vast compared to where I started, there are still times when the shoulder is weak and has small ranges in which motion is not under my control. At the limits of my range of motion, it’s painful. As recently as Friday, after a full few days, I couldn’t sustain writing on a blackboard.

BalanceAlso improving and also still not fully reliable. Fatigue always impairs my balance, but there are also just times and days when it seems to diminish for reasons I cannot find. Still, most of the time, it's better than it has been.

Tingling in extremitiesThe pins-and-needles in my hand and foot are completely gone.

The Brain Tumor DietThis turned out to be yet another fad diet. I’m back to day-of-surgery weight.

StaminaImproving every day, and still not anywhere near full strength. 80 percent, maybe? This week was better than last week and that was better than the week before. Improvements are not perceptible from day to day, but remarkable if we do weekly comparisons. I still have down days that feel like reversions, but the overall trend is positive.

Cognitive functioningFrustrating and unpredictable. The gaps are intermittent and usually small. It’s still maddening. Mostly, it’s short-term memory and an inability to summon specific words. Other times, it feels like my brain has just turned off, and I’m in dense-mode. This, too, is far less frequent than before. This is my major opportunity to learn grace and to laugh at myself. I’m making some progress on that front, as some of the lapses really are funny and rolling with it is easier when seen that way. Even if I never get better from here, I can function at this level.

Family StressMy family is remarkable and wonderful. I’m trying to get them to assess how their level of stress is these days. Last night, my balance was a little off and Shea automatically moved into a position to help stabilize me while we were climbing the stairs. I’m not sure this is something I would have had on my wish-list of things for her to learn, but between her natural observation skills self and her innate kindness, she’s picked it up. As I’ve recovered, she’s no longer angry with me, as she was in the beginning of this scary adventure.

So: while we never contemplated a brain tumor education or our excursion on the brain surgery conveyor belt, we did make our place on it as comfortable as possible and we all did it together. “We” in this case means our immediate family and it means all of you who have provided caring throughout this journey. We couldn’t have done it without you.

Sunday, November 16, 2008

Kearney's lab was featured on TV in Madison recently. It's cool, if you have time to watch it. In the current funding environment for science, they're also taking donations (via the university's proper research foundation) for Community Supported Research. She'd be glad to tell you all about it you're interested.

Throughout this whole mum's-having-brain-surgery adventure, I think one of the hardest things for me has been dealing with the humanity/objectivity balancing act of modern medicine. It's something I'm still struggling with, both emotionally and intellectually.

When things got difficult, I coped by observing, analyzing and trying to understand, and for the most part, thinking about things in that way helped me feel better about the situation. But there was one thing that consistently elicited a visceral, almost overwhelmingly negative reaction: my mum's bar code bracelet.

Now, intellectually I understand that it is critical for hospital staff to correctly identify patients, especially when the patient will be, say, having brain surgery, and thus be unable to communicate. I understand that having a rapid and accurate way to do this (like a bar code) is important. Also, I think it's great that before administering any medication, they would enter the patient and drug information into the computer to verify that it was all correct. I'm sure this system has prevented many medical errors, and I'm all for that; I just hate how they do it.

It really bothered me that every time a nurse came in to do something to my mother (not interact with her, do something to her), the first step was to scan her bar code, which was on a bracelet on her right wrist. It made me feel like my mum was just a hunk of meat, some sort of product the medical system was processing.

And, in a way, she was: during that portion of the interaction, the nurse's attention was focused on the bar code, the scanner, and the computer receiving the data. Now, to me, one of the most important aspects of nursing is observing the patient to figure out how she is doing. For the less engaged, less wonderful nurses, this aspect was essentially absent; even for the completely over-the-top fantastic nurses, checking on the patient was an entirely separate process from scanning in the patient to administer drugs and check the chart. And the scanning business always came first.

During one particularly memorable incident, a nurse strode in and practically rolled her eyes with impatience as my mum struggled to get her bad right arm over to the left side of the bed to be scanned. I got the impression that she would have been happier with five pounds of saran-wrapped ground chuck on a styrofoam tray. You don't have to wait around for packaged meat to move itself.

It just seemed wrong to me that the emphasis is now on "the computer says that patient X needs Y," rather than observing that patient X exhibits symptom Z, suggesting that treatment Y would be a good idea, or even "after prescribed treatment Y, patient X exhibited response Z."

So, can anyone devise a system that combines the speed, accuracy and convenience of scanning a bar code with some level of human interaction?

The next time I see a nurse walk into a hospital room, I want her eyes to go first to the face of the patient, not the bar code bracelet.

I’m feeling lucky. Lucky in my family, friends, support system and all the great people I know. Lucky that my constitution is as strong as it is. Lucky that science and medicine have advanced to the place that the surgery I had was even possible. Lucky that the tumor was benign, in an accessible place, and not entangled with my brain. Lucky that there is superb neurosurgeon in town these days. Lucky that I’ve been largely able to resume my regular life—so long as I get regular naps—without significant detectable differences from “before.” Lucky, most of all, that my life is populated by so many kind, smart, and interesting people.

Kearney and I have been struggling to synthesize and summarize what we’ve learned from this experience. We started this adventure on September 4, when the tumor was first diagnosed. As of mid-November, we haven’t been able to boil down or organize our thoughts very well, but here’s our starting list of lessons:

• Anytime any of “ours” are in the hospital, another of us should be there around the clock. No exceptions. (See post of September 25, at http://ckgunsalus.blogspot.com/2008/09/review-of-our-hospital-experience.html)

• In any major adventure like this, information must be paced, due to overload; the magnitude of the situation means that information can only be absorbed in small bites.

We’re ruminating about what kind of overview would be useful explaining the stages of brain tumor surgery and its aftermath. It seems to us that both chronologically-based and topically-based information would be valuable. Right now, for example, I'd like to know what's normal/not re incision healing. Is it to be expected that some parts are almost totally healed and others are still pink and sensitive? Topically-directed information chunks, like one on how the surgery is actually done, one on seizure dangers and likelihood, one on what to expect in each stage, one on meds and resources, etc., would have been helpful.

• On that last point, SURELY there’s a computer program out there somewhere where you can input how often you need to take a whole set of medications, including what you can take with food and with each other or not, and that will spit out possible schedules that optimize the whole mess? If not, something like this needs to be developed.

• This may sound self-evident, except that it wasn’t to me: the importance of learning to read your own signals and factor that into timing, rest, etc. Maybe one can only learn this the hard way, for oneself, through trial and error, but more details about the kinds of signals to watch for might have helped me learn this earlier and better.

• That we're from pretty serious hardy pioneer stock and shouldn’t take it for granted.

• The importance of various kinds of support offered as well as, for us, how to offer things that people can choose among without feeling like defectoids because they're taking help. Learning to take help gracefully has been a huge lesson from all of this, especially for me, who would always much rather offer help than receive it.

• The importance of sharing information and the experience both to validate the experience and to avoid feelings of isolation. We can only write about our encounters, but we reckon that we represent a category of people to whom our experiences are generalizable

• In the health system, the importance of how staff interact with patients/families and actions that were especially useful for eliciting the kind of care that was best suited to us.

• Entering medical world with a serious matter is profoundly isolating and so much of it happens "to" you that having some method, any constructive method, for taking some control back is helpful. Ours happened to be our counting exercise. There wasn't anything magic about what we did, except that it let us feel that we were still ourselves, and still had some power/control in an otherwise completely overwhelming process.

We don’t have any global observations yet, as we surmise that we’re still close enough to it that seeing the big picture is beyond our current perceptive ability. Kearney will add some additional thoughts after she finishes lunch.

Wednesday, November 12, 2008

Like so many fad diets, the effects of the Brain Tumor Diet are fleeting. Although it produced an immediate weight loss in the range of 10 pounds, I now again weigh exactly what I did on the morning of surgery. On the other hand, my understanding is that some people are happy with an immediate, quick loss, so maybe the diet book author community still has an edge they can use to sell this diet?

In the PT assessment for continuation, I was able to do single leg balances (eyes open—closed eyes are much harder) for a minute each, without touching a foot down during that time. This gain is enormous for me. While it’s great, it doesn’t have much to do with stability while walking, which is the next goal.

Posts may be sparse for the next few days, given the obligations they include; in this new husbanding-my-energy phase, I may need to concentrate on those obligations alone and getting rest. I hope your week goes well.

Tuesday, November 11, 2008

We couldn’t put our flag out this morning, because it was raining. I’m watching, in case it stops and we can change that. It’s the anniversary of Ernie’s death (Michael’s dad) as well, so there are many reasons to stop and think about others today. Right now, that seems better than the alternative, anyway.

Why are some lessons so hard to learn? Yesterday was a down day in energy/health, and didn’t go very well overall. By the time class began at 4:30, I felt iffy. When it was time for discussion, the students weren’t very engaged or responsive. My thinking on unengaged students, usually, is that what needs to change is what I’m doing. When not feeling well, though, it’s harder to act on that—which I also know. Rather than redirecting what was going on to get it back on track, I ended up thinking crabby thoughts about laptops in classrooms and unprepared students. The problem with that line of thought is that there are always laptops in classrooms and unprepared students, and there are lots of constructive ways to deal with that that still advance the cause. Feeling sorry for myself is never one of the top 500 answers. While it’s a lot harder to think creative thoughts when the words aren’t available and my brain is sluggish, the overall tone and trajectory are still always my job. I failed last night. That’s always a horrible feeling. L, bless her heart, was there with me, even though I’d said that things would be fine without her. She’s not been coming regularly, but something in our interaction yesterday brought her along, which made all the difference in the end, as when the energy just gave out—before class was complete—the luxury of just turning it over to her and going home was available. I have great friends. She managed to get things back on track and to get the students engaged and thinking about what they’d done, which was the goal. I’m really grateful, as well as chagrinned that something I know through and through—and teach—is something I once again failed at so badly. These are really hard lessons to learn and to learn. Why is that? It’s hard, but even so, it ought to be achievable.

Today should be better. Lots of sleep has helped a lot of the symptoms. One of the recurring lessons to be learned right now is about the number of events that are possible in any given day, and even more, balancing heavy days with lighter ones. It seems not to be a matter of time spent, so much as shifting gears, which is frustrating since multi-tasking has always been my thing. Yet one more thing to adapt to and try to be graceful about. The good news is that I’m not short on challenges.

While I manage to count my blessings (many) every day, I’m still cranky about the overall pace of recovery and how long this takes. More good news is that my actions are improving. One of my rules of the last decade is that I give myself permission to think anything I want to, and only judge myself on my actions. So long as my actions are honorable and appropriate, I let myself think any childish or retributive thoughts that arrive. I’m adapting this rule to the circumstances: so long as I pace myself (whether that be tortoise-paced or slow-hare-paced, the jury is still out on that one), I get to think the cranky thoughts about how this stinks. The trick, of course, is not to sabotage the good conduct, so as always, balance is essential. This is another part of reality, and of being a grown-up, that seems overrated to me.

The verdict is that more OT and PT would help, so we’re seeking insurance approval for another round of each. OT is still the shoulder and PT is working on balance and getting all the muscle groups working in concert again. The progress has been great, which might undermine re-approval; we’ll see what happens.

On other fronts, it looks like sufficient time has passed that the big outlets probably aren’t going to run the obituary for my father, which is disappointing to many in the family. I feel bad about this and wonder, if my energy had been better, if the outcome would have been different. There’s no way to know.

Trying to salvage some lemonade from yesterday’s load of lemons, at least I can work on making today’s class better and making sure that next week’s classes are great. The end of the semester is coming—and not a minute too soon. I think this approach, even with suboptimum teaching at times, was still better than it would have been to cancel the classes three weeks into the semester and in my calmer moments, I can find value across the semester. I’m working on holding those thoughts. If the sun were shining, this would be easier! Meanwhile, today I’m going to find the address and donate to the foodbank. Time to stop being so inward focused and do something for other people.

Monday, November 10, 2008

Both Kearney and I were a little under the weather this weekend, so our hoped-for status roundup didn’t get completed. We’ll still do it, just not exactly on today's two-month anniversary of the surgery. (September 10-November 10) This is good news, because it shows that we’ve absorbed one of the lessons of this experience thoroughly: if the energy isn’t there, don’t push it. It wasn’t, and we didn’t. In the meantime, the short version of the recovery roundup: remarkable progress and the end not yet in sight.

During my hair cut this weekend, Richard suggested that maybe I’m better at being a slow hare than I am at being a tortoise. That’s worth thinking about. Maybe that is a more realistic goal for me? Trying this idea out on a few people, most offered caution that a slow hare could easily accelerate almost without noticing and end up overdoing. This is also worth thinking about. As should be clear, the truth is that this extended recovery time is getting old, and there still isn’t any choice about it. This means that every day takes some deep breaths and re-orientation to appreciate all that’s truly wonderful and to pick a mood that makes more sense given events and timing. On the plus-slide of the ledger, visits from some out-of-town (and in-town) friends brightened the weekend.

Watching “House” with Shea, we found that season five includes both a craniotomy (graphic images—how do they do that, anyway?—of scalp being peeled back and circle of skull cut out) and the death of his father. Maybe I’ve actually been in a TV series all this time and haven’t known it? That would go a long way to explaining some of the truly improbable events of the past few months. On the other hand, you cannot make some of this stuff up, so it’s sadly more likely that this is just reality. Parts of reality can be overrated, in my experience, but again, here’s an area we don’t get to choose, so finding what there is to appreciate and going with that is our overall game plan. The one thing that’s never hard to appreciate is all the support you’ve given each of us throughout this adventure.

Friday, November 7, 2008

The tortoise concept has been pushed pretty hard these past two months and, eventually, it stimulated curiosity on my part about the creatures. A few interesting tidbits: tortoises thermoregulate by sunning themselves; their main activities are sleeping and eating; and in the wild they hibernate. Also, they're said to be very curious. This all sounds a lot like me, so the metaphor might be a better one than I’d imagined.

Meanwhile, life flows on. I took my second trip this week, this one to Sarasota, and again the travel went very smoothly. I’m learning, slowly, so the schedule had a lot of rest time built into it. I arrived the night before, got a great night’s sleep and then had a magical few hours sitting in the sun watching the Gulf of Mexico. That was civilized and rejuvenating. The group was quick, interactive, fun and appreciative. No significant travel delays or disasters. (It seems to be true, by the way, that the pins in my head don't cause any issues at all for the security/scanners in airports.) Good trip, though, as usual, my overall energy level is/was very low. The batteries are recharging, but they are also emulating tortoises, so the progress is slower than I'd like. Nothing new there.

All told, my recovery has seen a small setback from my dad’s death and the surrounding events. While I was mostly weaned from the drugs before (except the dilantin, as a prophylactic against seizures), the headaches are back so we reintroduced the vicodin, especially at night. My right shoulder and arm are locking up again, though with exercise and taping, that’s improving. My balance is still unpredictable at times and needs continuing work. Still have little memory and cognitive hiccups. Etc. Kearney and I will do a complete retrospective on Monday, which marks two months since the surgery. Put in that light, everything is going remarkably well, which is worth remembering. What a strange journey it has all been. And continues to be.

Kearney’s post yesterday about the amazing events of this week put it as well as I ever could. So, let’s stand on her words and I’ll go back to recharging my energy and rebuilding my strength. The weekend approaches and weekends are good. Cheers to all.

Thursday, November 6, 2008

The past week has brought major changes in the way I see the world. First my grandpa died, and I have been forced to try to conceive of a world without Gunny. Then we elected Obama.

G was, in many ways, a strange character. He was full of contradictions, and if I had to pick a word that reminded me of him, "dichotomy" wouldn't be a bad way to go. He elicited equally mixed reactions in other people, but whatever you thought of him (and personally I both loved and admired him, flawed as he was), you have to admit he had a big personality, a big presence, and a big impact on his surroundings. To me, he always seemed rather like a force of nature: he sometimes brought peace and moments of real joy, sometimes chaos, even disaster, and he was always unstoppable.

I will miss him. He leaves a big hole. For now, though, I find solace in the knowledge that G may be physically gone, but it'll take a lot more than death to eradicate the the mark he left on the world. A Walker might even say that the G-force remains.

It'll be a long time before the world forgets Gunny.

And, just as this change has shifted the landscape of my world, the election of Obama has changed the landscape of the whole world. One skeptic of my acquaintance couldn't understand my excitement; "he hasn't done anything yet!" But he doesn't have to. Legislation will likely never have as big an impact on the economy as perception. And the difference in how the rest of the world sees us, and the way we see ourselves....

I'm excited for the future. I'm just sad G won't be here to see it.Kearney

Tuesday, November 4, 2008

The tortoise approach means today has to be about conserving energy and resting for teaching later. Things are getting done, but energy is running low. In general, writing here helps organize and ground me and it usually gives energy back. Today, though there’s not enough even to work on getting the lift and perspective.

On a cool note, Anna Shea is serving as an election judge again today—despite being, in her words, “very, very annoyed” that she is just a few months too young to vote. She was quoted saying as much (in the article's lead) in the local newspaper’s story about the mock election at Urbana High School. She participated but opined that the primary effect of the whole exercise was to rub it in that she's not allowed to vote "for real." Today is her second stint as an election judge, in a cool local program of the local County Clerk (R) to fill out the very sparse ranks of election judges and to involve high school kids in the process. She was up in time to be at her assigned polling place to set up by 5 a.m. She is at one of the campus precincts today, and it should be hopping, both with voters and challenges to those voters. The election judges do the first-level ruling on the challenges, within a certain set of parameters.

The campaigns have been recruiting lawyers to staff polling places to make and to defend against challenges to voters. Our campus precincts are always hotbeds of challenges. When I asked a good lawyer friend what Shea needed to know when challenges were placed to student voters, he said: “Tell her not to let any of the older judges bully her: there’s no chief among the judges, and her vote on a challenge counts as much as anyone else’s. She should follow what she thinks is right and be assertive about it.” So that’s what we told her. The other judges should fasten their seat belts. It will be fascinating to hear about how the day unfolds.

Kearney has voted and is exhilarated. She writes that she doesn’t know how anyone can be cross on such a great day. We’re on our way to vote shortly, on the way to PT, and are looking forward to getting our own lift from participating.

Monday, November 3, 2008

When I was very small, men still wore hats to work. I have a vivid recollection of my father coming home from work and playing a game where he would pretend to be putting his hat on the shelf in the front hall closet and instead pick me up, swing me in the air and place me on the shelf “by mistake.” Then he would close the door (the closet light stayed on) and go searching for me. “Where’s Tina?” “Where could she be?” Then, after looking in two or three ritual places, he’d look in the closet, find me to great astonishment, and we’d go through the whole process two or three times, trying to “figure out” how I could have been mistaken for a hat and ended up on the top shelf of the closet. As I remember it, this game involved much giggling.

Knowing something about memory and how little I must have been to fit on the closet shelf, and considering how I remember this game, including my outfit, I’m guessing the visual parts of this memory must come from a photograph. We only lived in that house until I was 12 or so, and the memory is old enough that Michael has never heard me talk about it. If this picture exists, its whereabouts are unknown, though I’d like to find it. Even more, it would be interesting to know what has brought this memory, above so many others, back now; something must be stimulating it, but I’m clueless about what might be. Working on obituaries (one for public consumption, one for the scientific press), we’ve been looking through old records and that has been refreshing my memories about many of the scientific colleagues and students who populated my childhood, but all of those efforts have been focused on professional accomplishments and connections.

My father took me, and then my sister and me, to breakfast every Sunday morning at the Urbana Lincoln Hotel, so my mother could sleep. I had toast with the edges cut off, and cut into triangles, with chocolate milk. (The idea is now totally revolting, but it did help make me more accepting of the food preferences of small people when our own children were small.) Then we went to the lab to “work.” Large chunks of my early life took place in Roger Adams Lab. I had a small work area, did many “experiments” and wrote up their results. Later, after nepotism rules were eased enough that my mother was permitted to work again, I spent many hours at the lab with her. She’d been, in her day, the youngest woman ever to earn tenure at Cornell, but wasn’t permitted to work at Illinois when they first arrived. When she did go back to work, it was officially as a lab technician. Even later, when I was in high school and college, I did my stint processing BBRC manuscripts in that very same lab. (And still I turned out to be a lawyer.)

Even if I didn’t pursue science, and thus became the stupid, black sheep of my family, my upbringing among scientists shaped my career: I like scientists, appreciate they way they think, and enjoy big personalities in smart people. Even more, I have a high tolerance for conflict and clashes, even among big personalities, which has more than once opened opportunities that others passed up, leading to great chances for me.

Thinking about how we lay down childhood memories is interesting. My father often talked about the teacher at the one-room schoolhouse he attended with his sisters, and how important she was in his education. Her name was Evangaline McArthur; she was so important to him and he talked about her so fondly that I still remember her name. It’s probably been 15 years since we last had one of these conversations, but they’ve always stuck with me.

Another memory that’s been jogged by recent events is that both of Michael’s parents considered their deaths to be very private, and neither wanted a funeral or a memorial service. They couldn’t have been more different than my dad, except in this aspect. I’m wondering if this is generational? Geographic? Cultural? Something about growing upon farms? Dunno. Certainly I see notices for funeral services for people in their generation, but all three were adamant and went to great lengths to manage their final illnesses as privately as possible. My father died at home, and not “in a home,” which was of paramount importance to him. (I wish we could say the same for Michael’s parents. It’s clearly what they wished for, not the hospital deaths they had.) Michael and his brothers created a memorial to his parents that restored 12 acres of prairie in one of their favorite parks, and we held a memorial service for both of them some months after Ernie’s death, when the restoration was ready to begin. It was a wonderful celebration of two incredible people and made for a happy family reunion weekend. Thinking about that, and its timing, has been helpful to me, as its timing was similar to what we’re planning now. There’s some solace there that our absence of ceremony now does not prevent a suitable remembrance later.

Part of becoming more tortoise-like is learning to balance the urgency and imperatives of “to do” lists with the bigger picture. This is hard for me, as items on a “to do” list have given structure to my life. Cleaning our attic a while back, we found a list I’d made while in second or third grade that my mother had preserved; I seem to have been making lists since learning to write. And once an item is on my list, it generally gets done. There is much to do right now and my energy is still limited. Even more, the items on the ICG list are often emotionally costly to complete, there are many of us who must collaborate to get them done and there are raw feelings all around, even if the tough-guy contingent is being stoic about it all. Meshing so many styles would be complicated even without the emotional load. With it... Being gentle with each other and pacing ourselves must be a priority. I’ve put it on the list.

As I’ve been both tired and sad, symptoms are flaring up again: the headaches are back, my reading ability is coming and going, and my stamina is down. There’s good news in all of this, though: I’ve clearly made great strides in my tortoise lessons, as it’s become almost second-nature (well, let’s be honest, fourth-nature) to stop and rest and to heed the signals. If my head hurts, I take the meds and lie down. I’m even getting better at asking for help and delays where indicated. As always, the responses are fast, warm, generous and loving. It’s not getting any easier to be helped, just easier to recognize that it doesn’t make me defective or bad to need it, and that, were the tables turned, I would be glad to be asked. You’ve all made these points in many ways, and truly, I am learning.

We couldn’t have gotten this far without the great kindnesses and caring of so many. It seems inadequate to say “thanks,” but it is heartfelt. Thanks.

Sunday, November 2, 2008

After my father’s death on top of my brain tumor, a lot of people have been commiserating with me about my bad year. As always, the support and kind wishes are welcome. We need all the support we can get, just about now.

There is one point worth noting for the record, though: I’m not having a bad year. At worst, I’m having some bad months. There’s no disputing that September and October aren’t in contention for the greatest-month-ever award. That doesn’t pollute their neighbors, though, and while November looks to hold some challenges, we’re not writing it off yet. Many of the months before September were great, and some of next year looks both challenging and fun. I am not conceding the entire year for the unwelcome elements of two months.

The events of the last few days left me, predictably enough, pretty tired, and I spent most of yesterday resting and/or sleeping, aside from one ethics discussion in Chemistry. The rest helped, and I’m hoping will help me recharge before the week starts.

As always, the kindness of people is overwhelming. We are leaning on many.

We have made progress on the things needing doing and are starting on the next steps. We need to finish obituaries, both general public and science-centric versions. There’s a monument to be selected and ordered, and a spring memorial service to start thinking about, including venue, so we can notify people with the announcements we also need to think about. J will be handling all the estate details, though we’ll offer whatever assistance she needs or wants. Before we can finish the obituaries, we need to tie down details of where to send memorial contributions. Some of these tasks require a weekday and others will just take more work and time. All will be fine with the tortoise approach.

Kearney and I worked on a first draft of an obituary and then sent it off to the rest of the family to edit and improve. Going through that effort highlighted the scope and achievements of Dad’s eight decades in science. (This floored me the first time I saw it, too: he went from a 1935 bachelor’s degree to a masters’ in 1937 and completed his Ph.D in 1940, immediately assuming a faculty position at Cornell. He left his last job, for the EPA in Florida, in 2004.) Remembrances of him from all corners of the globe highlight his contributions to the learning and lives of generations of students and colleagues. It was a big life that is leaving a big hole for many, not just his immediate family.

Adjusting to the changed geography of the emotional landscape will take some time. That’s aside from the shock of opening the door to J with a canister of ashes (I believe the polite word these days is “urn” but it sure looked like a black plastic box to me), instructions and news. It was hard on her, hard on us, and hard on the family, but it sure got the job done in the way my father wanted. With some drama, which was also one of his predilections. (Here you can see a major influence on my personality in my distaste for drama.) His method was abrupt, but completely effective in achieving his wishes. Keeping quiet the news of his final illness is the same: it accomplished what he wanted to do with a minimum of fuss—to him. He wanted to move from treatment to palliative care and maintain the peace of his environment. Those are completely understandable goals. I’d wish for the same things for myself and for anyone I love. I’d just do it more directly. Now you know how I come by being so straightforward, too. My goal is to find a good balance and pacing for getting done well the tasks before us. All my work on tortoisedom, as slow and fitful as it has been, will surely help.

Meanwhile, my arm has been untaped most of a week without serious bad effects, and continues to get stronger all the time. Yesterday and today, it was sore; tomorrow brings more occupational therapy, so we’ll consult then about whether that’s a sign of progress or something to address.

Headaches still calibrate my activity levels: too high, and the headaches come back. Hitting the mark, and the headaches are absent. I might have chosen another signal, given the opportunity, but seems to fall into the area of “don’t get to choose.” That is a big category these past two months. I’m making my peace with it.

Our Medical Adventure

In late August 2008, Tina was diagnosed with a large meningioma in her left parietal lobe. It was successfully removed on September 10. The very first entry from September (The Beginning) provides some background information.